Decisions decisions.......

[Dawg52]

As many of you know, my mom(93) fell and broker her hip and shoulder in early April. She has been in a nursing home going through rehab, but her appetite has gone down the toilet. It actually began about a year ago, but she was able to maintain her weight by snacking. Now, nothing taste good to her and she has no desire for any kind of food. I try and try, but get just a little down. She has lost 17lbs since her fall.

The nursing home people are suggesting a surgically implanted feeding tube as they feel the one through the nose wouldn't do the job in her case. They have seen cases where it perks the patient up enough that their appetite returns. I have my doubts though. Mom is not fired up over it, but probably could be talked into it. She has confided in me that she wished the lord would just take her. But she is not always in this mood and still has a good mind. People visit her and she talks to some on the phone. If she would just eat, she could still have some quality of life. Her sister died at 97 and we chose not to go the feeding tube route as she simply wanted to go and was miserable. No upside in her case. If we don't go with a feeding tube, hospice is in the picture.

This is something most of us have to deal with at some point with a family member. I was just hoping the answer would be a little more obvious.

 

[Bestwifeever]

No advice/opinion, just your mom is a lucky person to have someone like you in her life.

Maybe the medical folks on the boards will weigh in.

 

[REWahoo]

Dawg, my heart goes out to you. There is no right answer - and conversely, no wrong answer. Letting go may be the most loving thing you can do for your mom, but there is no way you can be certain.

All you can do is what you think she would tell you to do if she was in full control of her faculties.

EDIT: I want to add that based on my experience with my dad and my father-in-law, regardless of the decision you make you will always question whether or not you should have gone the other way. That's human nature and I don't think any of us can get around it.

 

[calmloki]

....
EDIT: I want to add that based on my experience with my dad and my father-in-law, regardless of the decision you make you will always question whether or not you should have gone the other way. That's human nature and I don't think any of us can get around it.

For the future, have faith that you made the best decision you could with the facts and situation as it was at the time and that you would do the same given the same situation and facts again. Best to you and your Mom.

 

[Moemg]

Dawg , Sorry to hear this .It's a tough decision . If it was my Mom I would discuss all the options with her Physician and then I would ask my Mom what she wanted . You can always go with a nasal feeding tube and if she pulls it out you have your answer.

 

[MichaelB]

Dawg, this is tough. There is no obvious answer, nor an easy one, and REW is right in pointing out that this leads to lots of second guessing.

If she is taking medication that causes an upset stomach, that can be treated without the feeding tube. If she is depressed as a result of her surroundings, that might also lead to her not eating.

Ensure is a liquid meal supplement / replacement and might help.

This should be discussed with her PCP before making any choices.

 

[bbbamI]

Dawg, I've been thinking about you and your mom. Even though I'm not you, I can understand the dilemma.

Currently I'm attempting to get the facts on feeding tubes as I may have to face this situation with my momma. My daddy is too emotional to even discuss it at this point. My momma has Alzheimer's and is not capable of making decisions. However I know in my heart what she would want.

I agree with Moe. Get all the facts, then discuss it with your mom.

 

[Rich_by_the_Bay]

What a difficult situation. Some food for thought:

The insertion of long-term feeding tubes is much easier and less traumatic today than in even the recent past. It usually gets done under mild sedation, outpatient, and through an endoscopic procedure (gastroscopy). So the actual procedure itself is not that dangerous or "major."

Rather the issue is whether the poor intake reflects depression, reversible diseases, or another temporary setback. Is this her way of expressing loss of a desire to live? If so, is this decision based on accurate interpretation of her situation or is it due to cognitive inability to comprehend the situation, or perhaps other diseases or meds that impair her judgment. Can you understand her apparent decision personally? Would you make a similar decision? Is there reasonable hope for recovery to a positive quality of life?

Feeding and hydration are often the last issues over which dying or highly impaired people have any control. The anguish over making those decisions is sometimes worse than actually implementing and enduring their impact.

A final thought: perhaps you can agree to the feeding tube but with the understanding that if she still does not want it after a month or two (when she will be hydrated, nourished, and further rehabbed), it can be removed with everyone's buy-in, however difficult that decision might be for some family and friends. Her doctor should be part of that buy-in in advance if possible.

I have no answers but hope that helps. My personal experience (Dad in a similar dilemma) makes me wish I had withdrawn tube feeding earlier, as I think he wanted.

 

[haha]

My best to you Dawg. It is always hard. My Dad caught a break and went from pretty good health to dead literally overnight. My Mother wasn't so lucky, and there is no way to escape the pain for the children.

But it helped me to know that I did my best, and that will be a big help to you as you go on in life. Any relatives with good judgement and emotional intelligence that you can pull in may help too, as they can dilute the feeling of responsibility a bit.

Ha

 

[GregLee]

Since she is still lucid, I don't see an ethical problem -- let her decide about the feeding tube. I suppose, though, there might be a difficult line to draw between explaining to her exactly what the feeding tube would be like, on the one hand, and advocating its use.

My mother, in the last year of her life, always had some appetite, though she lost a lot of weight, but for her, hydration was the big problem. I worked hard at getting her to drink more, but it seemed that she just couldn't manage that.

 

[Dawg52]

Dawg , Sorry to hear this .It's a tough decision . If it was my Mom I would discuss all the options with her Physician and then I would ask my Mom what she wanted . You can always go with a nasal feeding tube and if she pulls it out you have your answer.

I feel sure her Physician would recommend a feeding tube. My aunt used the same physician and most everything she recommended was pro-life. Only when my aunt saw a specialist did I get some good common sense advice. Not to say her primary doc wasn't giving sound advice, but I got the impression she was more worried about liability issues.

Dawg, this is tough. There is no obvious answer, nor an easy one, and REW is right in pointing out that this leads to lots of second guessing.

If she is taking medication that causes an upset stomach, that can be treated without the feeding tube. If she is depressed as a result of her surroundings, that might also lead to her not eating.

Ensure is a liquid meal supplement / replacement and might help.

This should be discussed with her PCP before making any choices.

She is given liquid supplements and takes an antidepressant. The drug was prescribed not so much for depression, but for one of it's side affects. Gaining weight. Obviously not working.

What a difficult situation. Some food for thought:

The insertion of long-term feeding tubes is much easier and less traumatic today than in even the recent past. It usually gets done under mild sedation, outpatient, and through an endoscopic procedure (gastroscopy). So the actual procedure itself is not that dangerous or "major."

Rather the issue is whether the poor intake reflects depression, reversible diseases, or another temporary setback. Is this her way of expressing loss of a desire to live? If so, is this decision based on accurate interpretation of her situation or is it due to cognitive inability to comprehend the situation, or perhaps other diseases or meds that impair her judgment. Can you understand her apparent decision personally? Would you make a similar decision? Is there reasonable hope for recovery to a positive quality of life?

Feeding and hydration are often the last issues over which dying or highly impaired people have any control. The anguish over making those decisions is sometimes worse than actually implementing and enduring their impact.

A final thought: perhaps you can agree to the feeding tube but with the understanding that if she still does not want it after a month or two (when she will be hydrated, nourished, and further rehabbed), it can be removed with everyone's buy-in, however difficult that decision might be for some family and friends. Her doctor should be part of that buy-in in advance if possible.

I have no answers but hope that helps. My personal experience (Dad in a similar dilemma) makes me wish I had withdrawn tube feeding earlier, as I think he wanted.

I have thought about going with the longer term tube with the stipulation that it be removed after some positive results and a reasonable period of time. But I have a feeling other family members will balk when that time is up.

Any relatives with good judgement and emotional intelligence that you can pull in may help too, as they can dilute the feeling of responsibility a bit.

Ha

I'm going through that process, but not always easy getting everyone on the same page. But I am her only living son, so the final decision is mine.

Thanks for all the responses. Will have to sort it out soon. I have a feeling that a feeding tube will win out, but not a permanent one. The nursing home suggested a consult with a GI doc, then decide. Probably will look into that.

 

[brewer12345]

Sorry to hear of your dilemma, Dawg. I don't have anything useful to add, but I think that the care and effort you put into the decision means that it will be the right one.

 

[Nuiloa]

I have thought about going with the longer term tube with the stipulation that it be removed after some positive results and a reasonable period of time. But I have a feeling other family members will balk when that time is up.

We just went through a similar situation with my mom. She was given a tracheostomy and decided she could not live tied to a machine. She wanted to pull the plug but she felt tremendously guilty about how the decision would affect the family. We supported her fully, of course, but it was still very hard to help her plan her own death.

The person who helped us most was the in-house social worker who acted as mom's advocate. She would meet with the family and constantly express our mom's wishes. This took a tremendous amount of pressure off of mom as well as the rest of us. Although we all agreed to support mom, there were issues about when and how it would be done. The social worker met with us as a group and individually to talk things through. In the end, mom went peacefully, after saying goodbye to all of us.

Does the nursing home have an in-house social worker? When the time comes, he/she could act as your mom's advocate. That way, you will not be seen as the "bad guy" who made the decision but the whole family will have to recognize that it was your mom's choice and you were honoring it.

 

[GregLee]

We just went through a similar situation with my mom. She was given a tracheostomy and decided she could not live tied to a machine.

My mother was given a tracheostomy (at 87), which healed up in a few weeks at the Rehabilitation Hospital of the Pacific here in Honolulu. She was not in good health and died at 89, but the tracheostomy wasn't that much of a problem.

 

[Alan]

No advice or experience I can give you or share with you Dawg. I just wanted to say that your mom is lucky to have you and that I feel for you both.

 

[Nuiloa]

My mother was given a tracheostomy (at 87), which healed up in a few weeks at the Rehabilitation Hospital of the Pacific here in Honolulu. She was not in good health and died at 89, but the tracheostomy wasn't that much of a problem.

Aloha nui,

My mom had end-stage COPD (from years of smoking) and she could no longer breathe without help. As long as it was oxygen through a tube, she was ok, but she did not want to live in a nursing home bed, tied to the respirator. I can't say I blame her.

I'm glad your mom had a couple of years after her surgery.

 

[Purron]

No advice or experience I can give you or share with you Dawg. I just wanted to say that your mom is lucky to have you and that I feel for you both.

As is so often the case, Alan found the right words so I'll just echo his comments.

Please keep us posted Dawg.

 

[Ally]

Such a tough decision to make. I agree, she is fortunate to have you. All I can offer is what my son-in-law, a family doctor, told me when my dad had bladder cancer and they were offering extensive treatment that he didn't think he wanted. My son-in-law said that sometimes families want to do all that is possible for their parents, but it's not always the kindest thing to do. Sometimes you end up keeping them alive a little longer, but then they end up suffering more pain, disorientation, etc. He said that it's often the families guilt for not doing something that makes the decision, even though it may not be the easiest for the patient. I still feel some guilt that we didn't get the treatment and that he died within 4 weeks, but then he was able to stay lucid until almost the end and say goodbye to us all. I'm so sorry you are in this position.

 

[Katsmeow]

I second the suggestion to see if the nursing home has a social worker on staff. That would be well worth at least looking into.

You say your mom has a good mind so it seems to me that what she wants would be paramount although I realize you may be able to influence the decision.

I think that if it was my mom I would suggest -- while leaving it up to her -- to try the tube for at least a time to see if the appetite does indeed perk up.

 

[W2R]

Decisions like this are hard, and even harder is giving adequate advice on the internet. We can't know everything about the situation that you know, Dawg. So I decided to just say what I *do* know - - which is that you are a wonderful son to her, that you are conscientious and intelligent and caring, and that this is a tremendously difficult decision. No matter what you decide, you may have second thoughts because it isn't a clear cut situation. But if you do have second thoughts, remember that you did the best that you could and that is all anyone can expect or hope for.

 

[calmloki]

...
The person who helped us most was the in-house social worker who acted as mom's advocate. She would meet with the family and constantly express our mom's wishes. This took a tremendous amount of pressure off of mom as well as the rest of us. Although we all agreed to support mom, there were issues about when and how it would be done. The social worker met with us as a group and individually to talk things through. In the end, mom went peacefully, after saying goodbye to all of us.

Does the nursing home have an in-house social worker? When the time comes, he/she could act as your mom's advocate. That way, you will not be seen as the "bad guy" who made the decision but the whole family will have to recognize that it was your mom's choice and you were honoring it.

Good thought. When my Mom was heading into her end of days we were late getting in touch with Hospice. My gal was more proactive for her Mom. They were fantastic. Very highly recommended, sooner rather than later - the more you know....

 

[FreeAtLast]

I am sorry to hear about your mother's condition.

My mother recently passed away at 93 and was in Hospice for about 9 months. She had a pacemaker put in about 3 months earlier and we were hopeful that would solve her problem and improve the quality of her life, however, there was no improvement.

She did not have a particular disease, but hospice accepted her due to her declining state of health and age. She was able to stay in her ALF where she eventually passed away because of the help of hospice.

My sister's mother-in-law was in hospice for 3 or 4 years before she passed away about 2 weeks before my mother.

Hospice is there to make the final days as comfortable as possible for the patient.
I think they did a great job with my mother and I take comfort in making the decision to put her into the hospice program so that she was as comfortable as possible in her final months.

I wish you the best in your decision making process. I know that the hospice decision is not an easy one.

 

[Ronstar]

Dawg - Sorry for your mom's health and your situation. I remember my grandmother in the nursing home saying that she hurt all over and wished the Lord would take her. I was younger than 40 then and wondered how anyone could possibly say that. But as I get older, I can appreciate one's desire to live their final years/months as they wish. That said, I agree with the others that suggest getting advice from health care professionals that would help you in making the best decisions.

 

[kumquat]

I'd hate to be in your position, but if I was I think the key words are

and still has a good mind.

If that's the case, it is her decision, encourage her to make it, what ever it is.

 

[Dawg52]

She has a follow up appointment next week with the surgeon that replaced her hip. He replaces hips on older patients all the time, so he might have a suggestion. The nursing home staff recommended a consult with a GI doc, so we have an appointment scheduled with him the following week. In the meantime, I will be working hard on getting enough fluids and food down her. She actually had a decent day today getting some food down.

Although she has lost 17lbs, her weight is not that far off of what it should be for her height. She had a little cushion going into this, but she can't afford for it to continue.

Thanks for all the suggestions.